Michelle's Guestbook

I lost my mom to Alz .... she never knew i had Open H Surgery .... you are lucky to have yours. I had minimal invasive .... and you??? You are young and pretty ... I was in the same boat .... just trying to find a new doctor and she said .... you have a really loud MV. I am 54 now and never weighted more than 123 pounds .... I am vegan/vegetarian 20 years ...

Wow You look great !! My name is Curt Benttinen and I had my aortic valve replaced last year at Beth Israel Deaconess Hospital in Boston . I feel like I'm 18 years old again I'm soon to be 48 . I live on Cape Cod ,Centerville . I'm so happy for you that it's over and you will be fine . Just try to walk as much as you can and drink lot's of water to flush out those meds you got from surgery . If I can help you in your recovery give me a howler ,I'm on facebook . At 11 weeks I was back in the gym with no restrictions at all and yes I take warfarin now because I have a St Jude's Mechanical aortic valve it's no big deal at all, Trust Me !! Stay Strong and by the 2 week post op mark you will be feeling awesome !!!.

Thinking of you as tomorrow you will have your surgery. What a relief it will be to have the procedure and be on the mend! Hugs and best wishes, Bonnie

Best wishes for your surgery on Monday Michelle.. We didn't get to talk but if you want to my number is 339-224-8689 if you need last minute reassurance.. I will be thinking of you and praying for your fast recovery.. civita

I read your post with interest as we have had similar circumstances. I had the same family doctor since 1979. This past April a PA from Humana came to our house for my in-home wellness check. She listened to my heart and said you have a heart murmur. I said no I don't that's impossible. Well on June 6th I had my wellness doctor appointment with my family doctor. He did all the normal stuff and listened to my heart and put the stethoscope on my chest and then on my back. He started to walk away and at that moment I said to him, the insurance PA from Humana said I have a heart murmur!!! He came back over to me and listened again and said you do have a heart murmur. I saw him for over 30 years and he never heard it before. He scheduled me for an echocardiogram which showed that the aortic valve was regurgitating - how can someone miss something like this!! I then was scheduled to go to a cardiac surgeon. I didn't know what to expect so I went alone....the doctor came in and started talking about different kinds of valves and I said to him "What are you saying? Are you saying I need a heart valve?" Then he said, "Yes." Then I said, "When? like 10 years from now?" And he said, "No, now!" Who in the right mind tells someone who is alone that they need surgery when all I thought I was doing was getting information. I had no idea that I really had something so wrong with my aortic valve. Then I had to go back several weeks later after having the heart catherization in the hospital and this time my husband came with me cause I just didn't really like this doctor and I didn't want to be alone when this were going to move forward. While he was talking to us he then added, "you need a new aorta, too!" My husband and I looked at each other and I said, "You never told me that." So at that point I said I wanted to get a second opinion because now I really didn't trust this doctor. I felt in my gut so uncomfortable with this doctor. I then had to go to the counselor at the cardiac center because I was so confused and was getting very depressed. By my second visit with the counselor I knew I had to find another good surgeon. This website HeartValveSurgery.com gave me a list of doctors and hospitals and I decided to go to the University of Virginia Hospital and I chose Dr. John Kern as my surgeon based on information I found on the website. My initial calls to UVA were great and everyone was so helpful - even finding out that all my records were sent to the wrong department from the first surgeon and also that my echocardiogram images were not sent because the machine to do that was broken - if I hadn't been persistent it would have been a nightmare. It's important to do all your research and make sure you have all you information at hand so you can make the best decision and so you can feel comfortable in your decision on what you need to do for you. It's okay to be scared - but when you have all your ducks in order the fear will go away - you need to do what you need to do. I had no idea the pain would be so severe when I had the surgery, but honestly it was only bad for a few days and then as I was getting back on my feet each day became better than the one before - you have to look at the result down the road. Otherwise I'm sure none of us would do it - but adding years to your life is what you have to remember you are doing that for your loved ones and your family. It's well worth it!!

. . . October 24, 2017 . . . Good Fortune is yours ! ! Michelle, I had open heart surgery 30 years ago and have a St. Jude mechanical heart valve. I have been on coumadin for 30 years, and I pay little attention to the medicine. The cardiologist and surgeon did not want me to have a tissue valve because of my age. Tissue valves have a limited life span, and they did not want me going through several surgeries every time a tissue valve had to be replaced. I have a little device and check my INR (pro-time) . . coumadin level . . . every two weeks. I report my INR to an anti-coagulation team. I live in Colorado . . . where Denver is a "mile high" . . . and Breckenridge is 9600 feet high. It's a healthy place to be!

You will be in my prayers! I was diagnosed 10/4/2017 with Severe Aortic Stenosis, out of the blue. Did not see it coming. See surgeon tomorrow to set date - They told me I'm on the fast track - which means very soon. Hard to comprehend. We will get through this - God has got our backs! Never forget that. God Bless!

Hi Michelle. I am 5 days out from OHS....AVR..... as I sit in my recliner yesssss I do hurt but I wanted to give you some reassuring words. YOU WILL get thru this. It isDOABLE !!! Look at MEEEEE I am on The recovery side. I almost mimicked you in thoughts and feelings....... try and stay calm. Please reach out if ou would like to talk !

Hi Michelle, thank you for sharing your story. Mine is similar yo yours :). I have an appointment with my cardiac surgeon on October 31st to go over details of my surgery. And my options if they can’t repair my mitral valve. I’ll be sending positive thoughts and energy your way...all the way from Vancouver, BC Canada :)

Hi Michelle - I had aortic valve replacement on May 23,2017, so I am just 4 days shy of my 5 month post-op date. I had a mechanical heart valve (On-X) placed and am happy to report that I am going great! One would hardly know that I had heart surgery, except for my scar. Yes, I have to take warfarin (aka Coumadin) and check my INR every 2 weeks (now I have a home INR machine - I stick myself and get an instant read, then report the value to my doctor). As long as you eat a diet that is similar most days and take your medication on a consistent basis daily, taking blood thinners aren't that bad. You won't be able to do contact or extreme sports, and I personally will forever avoid on-road biking or motorcycle riding (only off-road biking with a helmet for me). However, I think the choice of a mechanical heart valve is ideal, due to the risk of frequent surgeries with a tissue valve. Let me know if you have any questions. I happen to be a pediatrician, so I understand patients needs and concerns.

Dear Michelle, You are so lucky to have your wonderful family to give you the support you need at this time. No worries, lots of prayers coming your way. You've got this! Your can do it. Hugs, Bonnie

Hi Michelle I don't often come on Adams site these days as it's been almost 6 years since my valve replacement surgery. I keep so well and in good health that I've almost forgotten how it feels to be where you are on your journey....but not quite. I remember the fear, confusion and sadness I felt especially on the days just before surgery.....I just couldn't believe that only a few months previous I'd felt fine well apart from the racing heartbeat, breathlessness and palpitations that I'd put down as a virus. Like you I discovered that I'd had rheumatic fever which had eaten away at my mitral valve resulting in the need for heart valve replacement surgery! Please do not be afraid you will be fine...your medical team are the best, those who love you will support and encourage you through the recovery period....If you don't understand anything then ask...nothing is ever too small for health professionals they will answer all your questions or concerns. And remember you also have this site whenever you feel down and in need of a wee bit more support I'm writing this email from a small town in Scotland many, many miles away from your own town in the USA but I do want to cross those miles to send you best wishes for your surgery and for an easy and quick recovery My thoughts and prayers are with you... Gracie

My greatest fear also was the breathing tube. My last memory was being wheeled down the hall to the ER & next seeing my DR (in scrubs )telling my everything went very well. No sensation of pain. no feeing at all in throat. Learned later that staff was able to remove tubes at exceptionally fast rate. pain not bad at all during entire recovery. I also had not had ANY major surgery prior to open-heart surgery. Was very worried before surgery. Age 74 at the time.

Hi Michelle, I once was walking along a beach, and someone had written into the sand... "Trust your heart, not your fears!". 10 years later, I had open heart surgery for an aortic valve replacement. I am closing in on 2 years now since my surgery, and what did I do the night before my big day? I went to the local running track early evening (5pm) and ran a 5km run. When I got home, I had a nice long shower, and relaxed over a cup of tea. Amazing what exercise can do to calm your nerves, and centre yourself. Remember that statistics are heavily in your favour, and say you will make it, and afterwards, you get to become a new Michelle, Version 2.0 -) ... and of course....  https://www.youtube.com/watch?v=d13NJjFMkro&feature=youtu.be

Hi Michelle! My thoughts and prayers go out to you as you prepare for your upcoming surgery. I have not had my surgery yet but understand how scary and overwhelming this can be. I could feel how raw your emotions are from your post. Hold fast to the knowledge that you have a great surgeon and that you have alot of support that will be there for you.

Hi Michelle, Though it's true that every OHS patient is different, perhaps my experience will help calm you. I had the full cut back in 2015 for a mitral valve repair and an aortic valve replacement. To my happy surprise, I didn't feel much pain at all afterward. In fact, by my second day post-op, I refused even non-narcotic pain relievers since I didn't need them. Barbara Walters had the same experience after her OHS. (Go on youtube and search for "Barbara Walters Open Heart Surgery." She did an hour-long special on it a few years back. Unfortunately I can't find the whole program, but there are clips on youtube. Her experience was very similar to mine except I would never eat the crap she stuffed herself with during recovery.) You may experience some down moods--very normal. But you've got a great support system. You may feel very fatigued for a while, as I and Baba Wawa did. Don't fight it, just be in it. ("What we resist, persists.") It does go away. You may have no appetite for a while and even be nauseous. This can be from your meds., especially potassium. They can give you something for nausea. But DON'T force yourself to eat, no matter how much the nurses might urge you. Your body will tell you when it's ready for food again. Honor your body--it's been through a lot. Thank it too for seeing you through. Last word: my own very worst experience was constipation. I let the days drift by without paying attention to you-know-what. And my nurses--wonderful as they all were--weren't paying attention either. So: If you haven't had a BM in two days MAX, ask for something to get things going again. Trust me, you don't want to have a week's build-up like I had. My very best to you, and I can promise you, it will not be even half as bad as your imagination is making it seem now. Do you know the mortality rate for this procedure? 1-2% (and those frequently had other health problems). I'd say a procedure which is done thousands upon thousands of times a year and has a 1-2% mortality rate is pretty good. And you'll LOVE showing off your "zipper" cut, especially at dinner. Gets them every time! Artie Rubin

Hi Michelle My wife Betsey was facing what you face in 2009. Her cardiologist at UCLA had her getting a mechanical valve but Betsey feared Coumadin. I got her an appointment for a second opinion at Cleveland Clinic, and she got an Edwards cow valve there. You probably have time to get an appointment at Cleveland Clinic and make a rational decision, even if you have to postpone surgery a couple of weeks. Remember, I is ultimately your decision, not anyone else's, what valve to get. Cleveland Clinic is the number one heart center for over 20 consecutive years. Give them a call and get their opinion. Best wishes, Jim Hilbe

Michelle I had my aortic value replaced in February and am doing extremely well. I'd be happy to share my very successful "adventure" with you. How do I contact you? Michael